Hi all, I really need some advice. I’ve been on T3 for the past 5 maybe 6 years. I can’t take thyroxine. For the past 6 weeks I’ve been getting breathless on exertion. This has increased and last night I ended up being admitted to N&N. High heart rate 177 BPM. X-ray taken and pulmonary oedema. Given drugs to get heart rate reduced plus diuretic to clear fluid. I believe I’ve also been given a beta blocker. I was told this morning that as I had been breathless for over 2 weeks I was to have echocardiograph to check if any clots in heart and then to be given thinners if needed and potentially to have shock to heart to put it back into rhythm. Early evening I was advised that they were waiting on another team to advise and they would come and see me. The other team was endocrine. I pretty much made it clear that the issues were not to do with my T3 because that’s what they weee trying to say. The questions were all about my dosing and my TSH. I’ve been told that tomorrow the endocrine consultant will come and see me and she is very experienced about T3 and has written a risk assessment paper. She also said I am to be put on the thinners for my blood which I’m totally thrown about because no one actually knows if I need them but they are going to give them to me for 6 weeks and I need to take care in case I injure myself. I have made it clear that I do not believe my breathlessness to be a endocrine. I do not trust endocrine at N&N. Tjink I may have expressed my concern. I’m sat here in hospital fuming because tomorrow I’m going to be seen by endo consultant. I can’t remember the consultant name but will know it the second I see it. Please can I ask does anyone know of any evidence that T3 will cause fast heart rate breathlessness and fluid on lungs. Sorry for long rant xx
Help advice needed: Hi all, I really need some... - Thyroid UK
Help advice needed
Presumably you have had a COVID test?
Get iron, ferritin, folate, B12 and vitamin D tested too
Low iron/ferritin often causes breathlessness
Hiya yep not Covid all other blinds within range. I haven’t actually seen them yet. X
I read some of your previous posts, what a terrible time you have had! .... you have a history of suppressed TSH low FT4 and over range FT3?
Do you still take T3 only from a private source?
Do you access have any recent results or before you went to hospital?
If the FT3 is high the hospital doctors will likely conclude this to be cause of your elevated heart rate, and heart strain resulting in lung fluid.
Also If you search the hospitals website “endocrine clinics” they will list the doctors, might jog your memory as to who you will be seeing tomorrow.
Hiya , thank you for responding. Long story but have been self purchase T3. Conversation with NHS endocrine this morning she will write to GP to see about have T3 back on prescription but wants me to reduce dosage. I have agreed to this but will be making it very clear if I start to become unwell and fatigued. She has recommended 6 weekly bloods. If GP not happy to do script without me seeing endo she will be happy to see me in clinic but will then result in wait due to corona. As usual it’s always about the suppressed TSH. 🙋♂️
Sounds like a fair plan. I hope your GP will be helpful. Although you shouldn’t have to wait to be seen in clinic. If you have blood tested there’s no reason they can’t discuss it over the phone and post you a prescription.
I have just seen cardiology and he wants endocrine to keep me on books and monitor whilst they get the heart rate corrected. X
You may just have developed breathlessness due to something other than T3. They might well try to blame it on your condition but argue your point.
I think they don't really understand about T3, and - like you state - jump onto the T3 bandwagon and assumptions are that it is T3 thats the cause or think you're taking too large a dose.
If you were on a stable dose of T3, I don't see how you'd now have a reaction
If you've been on T3 for 5 or 6 years, I doubt you'd have a bad reaction to it, unless there's a problem with the T3 itself.
Good luck with the encounter with the specialist.ca
I have Cushings disease and was taken off T3 which I fought to have prescribed. My condition is worsening daily as owing to Covid I can no longer travel to hospital in London. I had a Vega test which showed my T3 to be low as I have had to join the queue [ which I understand[ for a blood test. I also read that high cortisol can prevent the conversion from T4 to T3. Can anyone advise please??
This is a link that confirms the conversion:-
It’s rotten isn’t it when we get other conditions. I thought one of my girls was hypo. Wish she was hypo she was diagnosed as lupis but rheumatologist thinks she is more sjogrens. It’s also looking like she is APS. My Lad has pretty bad raynauds. They have talked about possible toe or finger amputation. Heart breaks when I think I’ve passed autoimmune onto my babies. Xx
Look at thyroid patients Canada thyroidpatients.ca
There are some posts on there that might be helpful.
I'm thinking of
1) the post on low TSH being ok.
2) the one on
'dosing by TSH is rubbish'
Are you on Facebook? Theres a group called T3 only support that might be helpful.
I'll update this post when I find the links
Endocrine did say cardiology should have seen me first as she shouldn’t have been needed as not an endocrine issue. Someone had decided because of my bloods that it should be endocrine. I had clearly taken my last dose of the day at around 11.pm then had thyroid function taken at 2.30am I’m told this was the one for concern. I think she said it was 13 I can’t remember what the ranges are but know this is over. I pointed out that the bloods were close to my dose and this was reason fir surge. She did seem to acknowledge and agree on that but as always it’s that wonderful suppressed TSH.
I think it is awful for people who were well on T3, have had it removed altogether. When I took T4 I didn't improve at all and I think many people are the same, i.e. that T4 doesn't improve their health. So options should be provided.
NDT (natural dessicated thyroid hormones) that contain all of the thyroid hormones has been withdrawn through misinformation by the 'experts'.
I would have expected people who have been trained about hypo would know about NDT and how many recovered their health. No blood tests were needed in the past as we were diagnosed according to our clinical symptoms alone and givden a trial of NDT which contains all of the thyroid hormones a healthy gland would supply.
If you've had a test that shows your T3 to be low, I don't understand why it cannot be prescribed. It's not our fault that Big Pharma has got greedy and raised the prices so high that it's been withdrawn - a life-saver for thousands of patients (but not in the UK unfortunately).
Anderson, 2020: Thyroid hormones and atrial fibrillationthyroidpatients.ca/2020/09/...
The significance of the TSH-FT3 circadian rhythm
thyroidpatients.ca/2020/07/...
Thyrotoxicosis vs. Low TSH
thyroidpatients.ca/2019/07/...
The TSH-T3 disjoint in thyroid therapy
thyroidpatients.ca/2019/10/...
Targeting TSH? It’s not as specific or as sensitive as people claim.
If you are on too high a dose it will make your heart rate quicken. You say you can’t take thyroxine, have you an allergy to it. When you take purely T3 you are actually making your thyroid almost go into overdrive as your body is getting high bursts of it. I found that having a combo of T4 with T3 works better. T4 in the body is only taken and converted as your body needs it. I couldn’t convert it so am given T3 twice a day and it works. In a way T3 would be better spread throughout the day in small amounts like the body would need it normally.
I had all the symptoms of a heart attack a year ago but was abroad on holiday so didn’t go to hospital until I came back. They couldn’t see then if I’d had one as too much time went by. They decided it must have been a asthma attack (wrong!!). I’ve had asthma since I was 10 and never had an attack like that so feel your pain. You just wish they’d listen to you
Every person is individual in what thyroid hormone replacement they need and in the amount and timing of the doses. Some are ok on T4, some need a combination, some need liquid thyroxine/ compounded thyroid meds, some need T3. Recent research has highlighted the role deiodinases play in converting thyroid hormones in the body and managing their levels. Some people like me, have demonstrable conversion problems (likely due to genetic mutations in the deiodinases) and they need T3 only.
I've been on T3 only for a few years now.At one time I tested doses and at 50mcg, not a high dose for my weight ~ 92kg, I got a Ft3 read of 10 which is the limit.
I dropped to 40 ok but now keep to 30-35 mcg in 4 split doses. I take 5 in the night and can fall asleep straight after the morning 15.
I'm going in for an Aldosterone test tm, due to high levels and fear the Endo poking about my numbers as he thinks I'm on 35 mcg Levo. God help me!
Video consults aren't good- but he had me on the data.
I have phoned and emailed secs.& nurse but they are all to busy to reply.
So, you're not alone..
My Tsh was 1.55 last taken - I don't do it often as I avoid retribution in the gulag 😎
If you have suppressed Tsh you may be on too much T3 but confusion over symptoms isn't helping.
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